Cynthia <cynthiaprentice@...> wrote:

Thank you Judi for your words of encouragement.

I think you are right about the "name" thing. I too, am totally fed
up with people saying "well what is wrong with you then?" As if
because Doctors can not find the darn thing it just does not exist.
And yes, when I see him on 1st February for the biopsies, I shall
tell him that I do want a "name" on this stupid disease. Then my
silly "Boss" who thinks I am making it all up, will for once hold her
tongue!

I wish you a lovely "Hogmanay" New Year's Eve in Scottish, and hope
that this New Year will bring bring more compassion into this world.

Kindest regards,

Cynthia
--- In Dercums_Disease@yahoogroups.com, "nonny46" <nonny46@y...>
wrote:
>
> Hello Cynthia,
>
> I am glad the Big Boss was able to diagnose you so quickly.  Yes,
it
> IS good to have a name for something, because that, to me, put an
end
> to the constant running to find out exactly what was wrong.  And
when
> someone asks me, I can give it a name, and not sound like I am just
> making up something.
>
> I'm happy that he is willing to work with you and for you and try
to
> learn from this.  That in itself is a miracle!
>
> Happy new year,
> Judi

Greetings!

Here is a better source for the Lava Ice massage stones:
http://www.lifestyle-dynamics.com/lava_ice.htm

They even have the small stones that fit into the wells of the Nukkles
massagers for a Nukkles + hot or cold stone massage. Umm, I can just
feel how good that must be. I think I have to order some for myself.

Peace,
--
Dora

Watsu, or underwater shiatsu massage, relaxes muscles by accupressure points and stretching in warm water, and is a good option for people who have limited mobility.
Stone massage alternates hot and cold stones to give you the muscle-relaxing benefits of deep-tissue massage without the pressure.
Arthritis Today, January / February 2005, p. 88

A New Beginning for all of us! I have decided to stop living as though I AM this disease, or this disease is ME. No more. It is a name, it is an entity, but it is definitely not what defines me. My body may be growing less able, but my mind still functions, and so do my heart and soul. I can still love, be compassionate, and help people. I can still laugh and see the funny side of things. I can still see beauty and life around me and appreciate it. "Take pleasure in the gift of pure being" as quoted from Ray Bradbury's "Martian Chronicles."
I sincerely pray that everyone here finds a new beginning for yourselves in 2005, and that this small group can light a single candle that will brighten the darkness.
Peace and God's blessings on all!
Judi

A New Beginning for all of us!  I have decided to stop living as
though I AM this disease, or this disease is ME.  No more.  It is a
name, it is an entity, but it is definitely not what defines me.  My
body may be growing less able, but my mind still functions, and so do
my heart and soul.  I can still love, be compassionate, and help
people.  I can still laugh and see the funny side of things.  I can
still see beauty and life around me and appreciate it.  "Take
pleasure in the gift of pure being" as quoted from Ray
Bradbury's "Martian Chronicles."

I sincerely pray that everyone here finds a new beginning for
yourselves in 2005, and that this small group can light a single
candle that will brighten the darkness.

Peace and God's blessings on all!

Judi

Dear Cynthia,

Congratulations! At least he was willing to listen and will do more for
you. Brava!

Of course we understand what "a few words" can mean. We have all been
there, and that is why we are all here. I wish you well on the upcoming
surgery next year, and that the head doctor will be able to learn what
he can to help you. Is he going to contact Dr. Tomlinson? Maybe that
would help with your upcoming biopsies.

Have a wonderful New Year!. Be well and take care. Use your spoons wisely.

Peace,
--
Dora Maillaro-Tomalonis
doramt@...
doramt@...
Yahoo! Messenger ID: w3icdora
888-238-1929 (Voicemail/Fax)
586-945-4388 (cell)
-----------------------
The Spoon Theory
http://www.butyoudontlooksick.com/spoons.htm
----------------------
"The difference between the right word
and the almost right word is the difference
between lightning and the lightning bug."
--Mark Twain
===========
Cynthia wrote:

>...Thank you to all those who have given me advice and help since I
>signed on here, you would never be able to imagine what a few words
>can mean when you feel down,
>
>Cynthia
>

Happy New Year from Denmark - only one more hour to go here.

Lots and lots of fireworks (money had been better placed in the
tsunami countries), very noisy and scary. I don't like it.

All the best wishes for 2005, may this year bring us closer to
solving the enigma of DD.

Dorrit, Denmark

Thank you Judi for your words of encouragement.

I think you are right about the "name" thing. I too, am totally fed
up with people saying "well what is wrong with you then?" As if
because Doctors can not find the darn thing it just does not exist.
And yes, when I see him on 1st February for the biopsies, I shall
tell him that I do want a "name" on this stupid disease. Then my
silly "Boss" who thinks I am making it all up, will for once hold her
tongue!

I wish you a lovely "Hogmanay" New Year's Eve in Scottish, and hope
that this New Year will bring bring more compassion into this world.

Kindest regards,

Cynthia
--- In Dercums_Disease@yahoogroups.com, "nonny46" <nonny46@y...>
wrote:
>
> Hello Cynthia,
>
> I am glad the Big Boss was able to diagnose you so quickly.  Yes,
it
> IS good to have a name for something, because that, to me, put an
end
> to the constant running to find out exactly what was wrong.  And
when
> someone asks me, I can give it a name, and not sound like I am just
> making up something.
>
> I'm happy that he is willing to work with you and for you and try
to
> learn from this.  That in itself is a miracle!
>
> Happy new year,
> Judi

Hello Cynthia,

I am glad the Big Boss was able to diagnose you so quickly.  Yes, it
IS good to have a name for something, because that, to me, put an end
to the constant running to find out exactly what was wrong.  And when
someone asks me, I can give it a name, and not sound like I am just
making up something.

I'm happy that he is willing to work with you and for you and try to
learn from this.  That in itself is a miracle!

Happy new year,
Judi

I finally got to see the Big Boss Doctor this morning (you have to
understand that this is a miracle in itself in Great Britain - we do
not get this chance very often) Our system is such that unless you
have private insurance - which most do not - you have no choice about
the Doctors you get to see.

He was very interested in what I had to say. Most of which came from
here. He had never seen a case of Dercums - but then he had never
been asked to diagnose  one before - and he did have the honesty to
say that on reflection he had probably seen several. He examined me
thoroughly - and most of my lumps........ we lost count after 28 and
there are dozens more all sizes....... He said that he would hesitate
to give it a name as he had been led to believe all Dercum lipomas
were solid but that he was going to research the subject. He is also
doing a small surgery to take several out in February as they have
lost the histology to the one I had out last year. I remarked that
usually the histology only came back as Lipomas anyway. He said that
he would look at the possibility of Lidocaine therapy as well.

He asked me how important was it to put a name to something. My
immedaite answer was that it was not as important as controlling the
pain. But on reflection I think when you can put a name to something
it somehow helps you to fight it. It is always more difficult to
fight the unknown element.

So all in all I found this morning's visit to be a step in the right
direction. I do not think I could have handled another Doctor saying
it was my imagination and to learn to live with it. We even spoke of
the HGH trial in the USA being undertaken by some - but he promptly
told me that he would never get funding for something like that.
There are times I hate living in England and that I feel like going
back to France where health has a more important budget from the
Gouvernment.

Thank you to all those who have given me advice and help since I
signed on here, you would never be able to imagine what a few words
can mean when you feel down,

Cynthia

--- In Dercums_Disease@yahoogroups.com, "Denise and Barry West"
<denbar@i...> wrote:
>  Hi, From everything I have read Kenya is Ok..only Somalia lost
lives,
> thankfully only 38 last I read,
> I pray you hear from your family soon.
> regards Teddy
>
> -------Original Message-------
>
> From: Dercums_Disease@yahoogroups.com
> Date: 12/31/04 04:29:18
> To: Dercums_Disease@yahoogroups.com
> Subject: [Dercums_Disease] Lipoma Forum?????
>
>
> ...................
> As for the Asian tsunami... my sister is in East Africa on holiday
> and we have not heard from her yet and the news has not spoken very
> much about that area - Has anyone heard if Kenya was hit as well?
>
>
>
>
>
>
>
> ------------------------ Yahoo! Groups Sponsor --------------------
~-->
> Make a clean sweep of pop-up ads. Yahoo! Companion Toolbar.
> Now with Pop-Up Blocker. Get it for free!
> http://us.click.yahoo.com/L5YrjA/eSIIAA/yQLSAA/VzSolB/TM
> --------------------------------------------------------------------
~->
>
>
> Yahoo! Groups Links

Oh Teddy, how sad!  But how good for this man that he had you sitting
next to him to be so understanding.  Yes, we have donated as well
through our church emergency fund.  I can't imagine such a huge loss
of life.  On 9/11 at least we had someone to lash back at--these
people have nothing.

Judi

.

Please ignore my last request about the Lipoma Forum - I have found
them again.

Best regards,
Cynthia

Does anybody else have problems accessing the Lipoma Forum at the
moment........... I have not been able to get the site for a couple
of weeks now.

I had hoped to print off a few more things to take to the Doctors
tomorrow - but I have a load to show him so I hope that it will
suffice.

I am still following everybodies progress as and when I can wrestle
the computer from my son !

As for the Asian tsunami... my sister is in East Africa on holiday
and we have not heard from her yet and the news has not spoken very
much about that area - Has anyone heard if Kenya was hit as well?

I know we all have our pains to deal with - but what a tradegy...

I will try to get on to chat at 19h00 GB time and see if anyone is in.

Kindest regards,

Cynthia

Wonderful news!  I'm so happy to hear how you are able to move around
better and with less pain.  I'll bet you are beginning to feel like a
prisoner who has been given her freedom.  Thanks for the "upper"
today!

Judi in foggy southern Indiana

What a fighter you are!  I sincerely hope and pray that the time goes
by quickly and you find you are finishing your treatments.  As Teddy
said, maybe you will not have any ill effects from it--a good friend
of ours who is in her 80's finished up her treatments in November,
never missed a beat in her daily life!

We're all thinking about you,

Blessings,
Judi

That's good news Dora.  I hope the remission continues!
Bev



--- In Dercums_Disease@yahoogroups.com, Dora Maillaro-Tomalonis
<doramt@w...> wrote:
> Greetings!
>
> Here it is, the first day after my fourth Remicade infusion. I
woke up
> this morning with the usual aches and pains, but not the searing
joint
> pain that has been my waking companion for the past couple of
weeks.
>
> It is amazing. The pain in the right shoulder joint capsule made
me feel
> like it would pop out if I moved the wrong way. My left knee has
been
> increasingly painful with the growing knot of a tumor on the
inside of
> that knee. I did not actually bound out of bed this morning, but I
was
> pretty sure the knee would support my weight when I got up. It
did. And
> my right hip was pretty happy when I stood up, too.
>
> I am walking around the place with my canes and not dragging about
being
> held up by a walker. I know I can walk from the living/dining room
to
> the kitchen instead of wondering if I have to use my chair to get
there.
> For a while, I really had to watch each step and move I made. Even
> getting repositioned in my power chair had been increasingly
painful. I
> was sure that the trip to the hospital and back home would make
today a
> day of serious rest. Getting the ramp unfolded and set up to get
my
> chair into and out of the van puts a strain on my back, hips, and
hands,
> especially if my husband and I are not in sync with every move. It
took
> two sessions, but I managed to use the vacuum on the carpets to
pick up
> the winter salt that gets tracked into the house after the recent
storm.
> And I am not exhausted at this time of night.
>
> My tail bone is not painful and alternating with going numb. Both
hips
> are relatively quiet. My left knee is a little stiff, but not very
> painful as I try to unbend it. I feel like a half-new person
today. I
> only hope that it continues. I need to reserve a little
skepticism, just
> in case. If things change significantly, I'll keep everyone
informed.
>
> Be well and take care. Use your spoons wisely.
>
> Peace,
> --
> Dora Maillaro-Tomalonis
> doramt@o...
> doramt@w...
> Yahoo! Messenger ID: w3icdora
> 888-238-1929 (Voicemail/Fax)
> 586-945-4388 (cell)
> -----------------------
> The Spoon Theory
> http://www.butyoudontlooksick.com/spoons.htm
> ----------------------
> "The difference between the right word
> and the almost right word is the difference
> between lightning and the lightning bug."
> --Mark Twain

Greetings!

Here it is, the first day after my fourth Remicade infusion. I woke up
this morning with the usual aches and pains, but not the searing joint
pain that has been my waking companion for the past couple of weeks.

It is amazing. The pain in the right shoulder joint capsule made me feel
like it would pop out if I moved the wrong way. My left knee has been
increasingly painful with the growing knot of a tumor on the inside of
that knee. I did not actually bound out of bed this morning, but I was
pretty sure the knee would support my weight when I got up. It did. And
my right hip was pretty happy when I stood up, too.

I am walking around the place with my canes and not dragging about being
held up by a walker. I know I can walk from the living/dining room to
the kitchen instead of wondering if I have to use my chair to get there.
For a while, I really had to watch each step and move I made. Even
getting repositioned in my power chair had been increasingly painful. I
was sure that the trip to the hospital and back home would make today a
day of serious rest. Getting the ramp unfolded and set up to get my
chair into and out of the van puts a strain on my back, hips, and hands,
especially if my husband and I are not in sync with every move. It took
two sessions, but I managed to use the vacuum on the carpets to pick up
the winter salt that gets tracked into the house after the recent storm.
And I am not exhausted at this time of night.

My tail bone is not painful and alternating with going numb. Both hips
are relatively quiet. My left knee is a little stiff, but not very
painful as I try to unbend it. I feel like a half-new person today. I
only hope that it continues. I need to reserve a little skepticism, just
in case. If things change significantly, I'll keep everyone informed.

Be well and take care. Use your spoons wisely.

Peace,
--
Dora Maillaro-Tomalonis
doramt@...
doramt@...
Yahoo! Messenger ID: w3icdora
888-238-1929 (Voicemail/Fax)
586-945-4388 (cell)
-----------------------
The Spoon Theory
http://www.butyoudontlooksick.com/spoons.htm
----------------------
"The difference between the right word
and the almost right word is the difference
between lightning and the lightning bug."
--Mark Twain

We are all following the situation in the far east and feel very
saddened and schocked about what has happened. I have a DD sufferer
friend in Sweden. Her only son and daughter in law was on the beach
when the wave came in (their very last day of 3 weeks' vacation in
Thailand) and they were able to run fast enough to save their lives,
and have returned safely to Sweden. But my friend said it was not so
much of a joyful feeling to meet them at the airport, because there
were so many other relatives waiting who did not know of the destiny
of their loved ones, and children returning home without parents.

A catastrophe for the countries involved so big that we have only
seen the tip of the iceberg yet.
Imagine Sumatra moving !!!

Teddy, sorry to hear about your pain. I have been out in the sun and
snow today which did not worsen my pain, but a few days ago it was
bad. Mystery.....

Take care all,
Dorrit

Good for you. I hope you keep on improving! I would cross all my fingers and toes...but ..they hurt. regards Teddy

Greetings!

Because of the crazy snowstorm that hit the midwest hard last Thursday,
I chose to postpone my Remicade infusion until this afternoon. Loading
my power chair by way of a manual ramp in the expected 7+ inches of snow
did not seem to be a wise choice. Today was closer to freezing instead
of below zero, and no white stuff was falling. And the infusion center
was very quiet today to boot.

As I have written recently, I have been in a lot of joint pain for the
past 2 weeks or so. I was attributing this to the lousy weather, an
increase in my Methotrexate from 4 pills to 6 per week about 2-1/2 weeks
ago (that thought occurred to me late last night), or that my body was
saying "Remicade, please!" Oh, and overextending myself in the past few
weeks has not helped either.

I woke up this morning in a lot of pain - nothing new there. Oddly
enough, I realized my pain level went from an 8 or 9 (out of 10), to
about a 5 by supper time. My knees, hips and shoulders no longer feel
like they are about to dislocate. I am managing with my two canes around
the house this evening instead of the walker I've been dragging around
with for the last week. I used my power chair to get around the hospital
today, and some at home as usual. But, I am in less pain sitting,
getting up, and moving.

With a healthy dose of skepticism, I will wait to pass serious judgments
on the situation until I get out of bed tomorrow morning. Somehow,
seeing this all reverse in a matter of hours seems too surreal. The
humidity has not dropped much since yesterday, and it was precipitating
(rain, sleet - who knows?) a little while ago. I took the same dose of
Methotrexate this past Saturday as the week before.

The Remicade is given by intravenous infusion over two hours. My
rheumatologist also orders Benedryl and hydrocortisone - to forestall
any possible side effects - by IV prior to starting the Remicade, with
saline to clear the IV between meds. I am not sure why I feel so good
tonight, but I am very happy about it. I'll keep you updated over the
next few days.

My rheumatologist has ordered the next two infusions to be four weeks
apart, and then we go back to every eight weeks. It really is helping
with the Dercum's fatty tumors. I saw a friend this afternoon who has
been watching me go through the progression of Dercum's Disease for the
past four years. I have not seen her in two months. She was amazed at
how noticeable the weight loss is, and how much my tumors have shrunk.
Other than my internist and rheumatologist, she is the only other person
besides my husband who has seen these changes up close.

Here's hoping this is genuine and not merely wishful thinking on my
part. Be well and take care. Use your spoons wisely.

Peace,
--
Dora Maillaro-Tomalonis
doramt@...
doramt@...
Yahoo! Messenger ID: w3icdora
888-238-1929 (Voicemail/Fax)
586-945-4388 (cell)
-----------------------
The Spoon Theory
http://www.butyoudontlooksick.com/spoons.htm
----------------------
"The difference between the right word
and the almost right word is the difference
between lightning and the lightning bug."
--Mark Twain

Good luck, Bev

Will be thinking of you

Dorrit

Dear Teddy,
Thanks for the prayers and encouragement.  I am feeling very
positive most of the time.  As with all of us, old man Dercum's is
what usually takes the wind out of my sails.  Yesterday was the pits
as low pressure moved in but I usually feel better once it rains.
Take care and God Bless you as well,
Bev


--- In Dercums_Disease@yahoogroups.com, "Denise and Barry West"
<denbar@i...> wrote:
> Hi Bev, I will be thinking of you every single day and my prayers
for as
> little stress and discomfort as possible during your treatment. My
Mum went
> through it 'sick free' and my wishes for the same for you, may you
draw
> strength and  courage from your loved ones and as much support you
need from
> us. GOD BLESS
> Your friend Teddy
>
>
>
> I saw the radiologist and the oncologist last week.  Today I start
> the radiation treatments. I will get tatooed this morning and then
> go daily for the next seven weeks, Monday through Friday. It's not
> real far so that will help.
>
>
>
>
>
> ------------------------ Yahoo! Groups Sponsor --------------------
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